Guest guest Posted February 5, 2005 Report Share Posted February 5, 2005 Rod, I have three children (almost 5, 3.5 and 14) and we are all to some degree affected. My (almost)five yr. old being the most severe and my youngest coming on strong after just presenting in the past yr. I think the most important thing to remember with mito is that it is always part of your life, but not your life. Everything we do , we do differently, because of mito. We never spend times in large crowds, but try to go out (just not much in flu season because we also have immune issues here). We avoid the heat so go out on cooler days to the parks. We use strollers, wagons or wheelchairs of the kids need to get very far. We also have to stay extremely organized because of so many meds and so many of us. When all is said and done, you need to love and laugh. I never want my kids to not " experience " life. I too have mito and it causes great fatigue. Probably like your wife though, who has time to be tired? It is hard to get everything done and that is where I think a great support system is really important. I am a single mom so I really rely on my mom who has learned to do it all from IV's to gtubes. Finding the right doctor is a must and having written protocols to rely on is very helpful for many on the group for when their doctors cannot be reached. ERs are second homes to some , but nightmares for many. Education is very needed in the parent because you will find the medical community is very lacking when it comes to mito knowledge. You will be the educator. It may sound overwhelming and sometimes it is. Just take it one day at a time and now you know you are not alone! Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2005 Report Share Posted February 5, 2005 Rod, I have three children (almost 5, 3.5 and 14) and we are all to some degree affected. My (almost)five yr. old being the most severe and my youngest coming on strong after just presenting in the past yr. I think the most important thing to remember with mito is that it is always part of your life, but not your life. Everything we do , we do differently, because of mito. We never spend times in large crowds, but try to go out (just not much in flu season because we also have immune issues here). We avoid the heat so go out on cooler days to the parks. We use strollers, wagons or wheelchairs of the kids need to get very far. We also have to stay extremely organized because of so many meds and so many of us. When all is said and done, you need to love and laugh. I never want my kids to not " experience " life. I too have mito and it causes great fatigue. Probably like your wife though, who has time to be tired? It is hard to get everything done and that is where I think a great support system is really important. I am a single mom so I really rely on my mom who has learned to do it all from IV's to gtubes. Finding the right doctor is a must and having written protocols to rely on is very helpful for many on the group for when their doctors cannot be reached. ERs are second homes to some , but nightmares for many. Education is very needed in the parent because you will find the medical community is very lacking when it comes to mito knowledge. You will be the educator. It may sound overwhelming and sometimes it is. Just take it one day at a time and now you know you are not alone! Dawn Quote Link to comment Share on other sites More sharing options...
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